Sunday, November 26, 2006

Thank You Andy Scott and Peter Stoffer

The following are the opening statements by Fredericton MP Andy Scott and Sackville-Eastern Shore MP Peter Stoffer on M-172 the private members' motion calling for a national autism strategy in Canada. Partisan politics may or may not prevent passage of this historic motion but the autism community in Canada could not have had two more knowledgeable, determined and elequent spokesman to raise autism awareness in the country. Whatever happens I sincerely thank Mr. Scott and Mr. Stoffer for all that they have done. While appellate courts have washed their hands of the autism crisis and politicians generally have tried to turn their backs on vulnerable autistic children Mr. Scott and Mr. Stoffer have been true champions.

Thank you Mr. Scott and Mr. Stoffer.

Autism Spectrum Disorder

Hon. Andy Scott (Fredericton, Lib.) moved: [Motion]

That, in the opinion of the House, the government should create a national strategy for autism spectrum disorder that would include: (a) the establishment, in cooperation with provincial governments, of national standards for the treatment of autism spectrum disorder and the delivery of related services; (b) the study, in cooperation with provincial governments, of the funding arrangements for the care of those with autism spectrum disorder, including the possibility of transferring federal funds to assist provincial governments to provide no-cost treatment, education, professional training and other required supports for Canadians with autism spectrum disorder without unreasonable wait times; (c) the creation of a national surveillance program for autism spectrum disorder to be managed by the Public Health Agency of Canada; and (d) the provision of funding for health research into treatments for autism spectrum disorder.

He said: Mr. Speaker, first, let me thank the large number of people who have aided in my understanding of this issue. They are parents, community activists and autism support workers. They are Canadians concerned about something that is unfinished business for Canada.

This is a moment when the national government can step up, accept responsibility within the context of its own authorities in this Confederation, and show leadership on this issue. This is a very rich country and, as such, we can no longer afford to look the other way in terms of this rather outrageous limitation of what is available through the public health insurance program in Canada.

I understand there are jurisdictional limitations to which we have to attend, but within that there is an opportunity to show leadership on this file, to work with provinces, to encourage them and incent them to deal with those areas, such as research and evidence-based public policy and standards.

The motion appeals to the government to show that leadership and to Parliament to ask the Government of Canada to do that. The rationale for this is relatively simple and stunningly inconsistent with my view of my country.

The reality is when parents are told their child, at 18 months old, has been diagnosed with autism spectrum disorder, depending upon how profound that condition might be, the effect on the child for the rest of his or her life could be incredibly limiting. Then they are told that there are treatments, therapies and things that can be done, but they are expensive. They may cost them their house. It means that somebody probably has to stay at home, which may cost a parent a job.

This is unacceptable in a country that prides itself on its public health care system. We have to move on this, and the Government of Canada can show leadership on this issue.

I am former assistant deputy minister of intergovernmental affairs with the province of New Brunswick. I understand the jurisdictional issues, but we cannot let those jurisdictional issues get in the way of doing what we know to be the right thing as a national government for Canadian citizens.

I became most aware of this as the member of Parliament for Fredericton. I have a military base at CFB Gagetown. When members of the forces were transferred to New Brunswick, if they happened to have children who were diagnosed with autism, they would call me to say that they needed to get back to Edmonton or some other place in the country. As a parliamentarian, as somebody who feels an obligation to those military personnel who serve our country, I was concerned. However, I was also concerned as a New Brunswicker. What does that say about everybody else who lives in New Brunswick, who would wish to have those services that are better provided in other places in the country?

The other thing that has been revealed to me is all the treatments and therapies available. It is a spectrum disorder so I do not think we can get caught in a narrow debate about this one or that one. The reality is there are things out there at which we need to look. There are things available today that work and they need to be supported by the government so they can be used by parents and families.

I like to see this as a rights issue, something that we do because it is the right thing to do. However, if I cannot convince everybody to do it for that reason, just think about the long term costs of not doing intervention early and now. Think about what that means in terms of the life of that individual and the role the state will have to play. If it is not enough to simply speak to the rightness of this issue, then we should realize that the state will carry a tremendous cost if we do not do the right thing early.

In putting forward a motion to Parliament to appeal to the government, the process I envision would be the national government would recognize that medicare formularies are the jurisdiction of provincial governments. The national government could work with provincial governments, on behalf of Canadian citizens, to advance this issue, with the ultimate objective being that the treatment and care of Canadians with autism would be covered under medicare.

We cannot do that from here and we accept that. However, we can show leadership, offer incentives, do the research and establish surveillance so we can do good evidence-based public policy. Those are all things that are clearly under the purview of the national government. Until we do those things, we really do not have any right to expect the provinces to do the right thing. When we do those things, then we will have a stronger moral position on the other issues.

Again, I want to ensure that it is understood. I know this will be a difficult issue for the government to deal with because of the jurisdictional issue. That is an understood aspect of this debate. I do not think for a second that should allow the national government not to do the things within its purview. It will make it more difficult for the provinces to say no. More optimistically, it think it will encourage the provinces to do the right thing as well.

I would like to thank a number of people. The seconder for this motion, the member for Sackville—Eastern Shore, has long been a champion on this issue. In fact, when my bill was drawn in the process earlier than his, he offered me the opportunity to put this forward so it would be a votable motion, and I appreciate that.

I appreciate the many meetings I have had with representatives of the government. I believe the government genuinely would like to find a way to get this done. For those who watch this place, sometimes not operating at its finest, maybe we can come to a conclusion that would demonstrate just how well this place can work when something calls out to be fixed.

I was asked to read a letter by a constituent in my riding, who is in the armed forces. His name is Brian Rimpilainen. He is from Fredericton. He and his wife Tracy have two kids, a four year old and an eight year old, who has been diagnosed with autism. This was specifically written by him. He stated:

The birth of a child is both joyous and trying at times, but at the age of 3 yrs came the crushing blow of an autism diagnosis for our oldest boy. Overwhelming and frightening was the situation we were thrust into. With reason comes questions— What to do?—What information can we find to educate?—What treatments?— WHAT HELP?

Well, there is ABA (Applied Behavioural Analysis). At our own expense, we sought the guidance of Dr. Paul McDonnell and a therapist. 40 hrs/ week is the recommended therapy which is not always possible for some families. We learned the basics of ABA—we did the best that we could. Later, some assistance came—but too late for our son—he was already entering kindergarten. Tracy was fortunate to have the opportunity to be certified as an ASW (Autism Support Worker) at the University of New Brunswick's College of Extended Learning.

We know that we were blessed to have been given an autistic child—we celebrate the joys of both our children's successes and embrace the hardships/headaches of autism. But what now?— What more can be done?—What will happen when Tracy and I are gone? Will my son be taken care of in his adult years?

I see the heartache of parents who relocate to find services for their autistic children. Shall we all move to Alberta where services are enviable? As a member of the Canadian Forces I have contemplated the possibility of a posting. What services will be available? How will the move disturb our children's balanced life?

I see that there is research and training that could be done. The school-aged autistics need the help of trained Teacher's Assistants. “Inclusion” is not the answer for all autistics, some require one-on-one instruction, some flourish with the social interaction of peer mentoring. I question why all autistics across Canada can't get the same level of services within reasonable wait times. Stress and hardship in the autistic family leads to a higher than normal divorce rate: the mother becoming the primary caregiver.

With such a high prevalence rate we must act now. Does it not make sense to invest in trying to facilitate the ability of autistics to achieve their potential as productive citizens? The alternative is an immense cost to society in long-term care. AUTISM does not discriminate, it does not wait, it does not stop at age 6. As a father/ parent, all I can hope is the recognition, dignity, and security for our children as citizens of Canada.

For Brian and Tracy, their story tells the story. I do not know how we can turn our backs on the thousands of Canadians who can tell that story.

As a Parliament, we need to recognize our responsibilities. The Government of Canada needs to show leadership in its dealings with the provinces. It should be respectful. It should not pretend or grandstand. I am not grandstanding. This is something that needs to happen. In this place we have the opportunity to do that. We have the opportunity to show the leadership, to do the research, to make money available, to do the surveillance and to do good evidence-based public policy to ensure that parents know what treatments are working, where they are, who does them and so on. That is critically important.

Also, I thank a Grade 12 political science classroom in Fredericton. Last year the classroom, which graduated in June, took on the project. The class this year has picked it up. The students are writing to members of Parliament. I am sure all members have received letters. These kids have brought in parents and professionals. They had somebody in who drafts legislation for the Province of New Brunswick. They have committed themselves to this. Their teacher is an amazing teacher, by my thinking, and these kids are absolutely committed to this. In fact, I suspect right now there is a full class taking a look at this.

It really speaks to making this place work for Canadians. They are watching. They would like to see this happen. They have put a lot of time in it. They understand the science. They understand the implications for parents and their families.

At the end of the day, I do not think there is anything else to say. In a country with this kind of wealth, and Canada is a wealthy country, and in a country that takes such pride in our public health insurance program, as Canadians, regardless of jurisdiction, we need to step up and say this is wrong and it needs to end. People who need this service have a right to expect their government to pay for it.

Mr. Peter Stoffer (Sackville—Eastern Shore, NDP):

Mr. Speaker, I cannot thank the hon. member for Fredericton enough for his dedication and work for those thousands of families with children who have autism.

Some people would be concerned about the fiscal costs of this initial treatment and everything else. However, research has shown that, in the long run, federal, provincial and territorial governments would save money. Instead of being expenditures, these are investments in our children.

I know every one of us in our ridings have families with children with autism. This is something that transcends all of us across the country. The member knows that in one out of every 166 births in our country a child is diagnosed with some form of autism, and it is increasing. We need to find out what causes autism, what we can do to prevent it from happening, if that is possible. We especially need to provide the care and the treatment they require.

On the fiscal argument, I would like the member to have a couple of more moments to indicate that this is really not an expenditure of dollars. It is an investment in some of the most beautiful children in the world.

Hon. Andy Scott:

Mr. Speaker, I understand that when we ask a question, we are generally supposed to know what the answer is so we are not surprised, but it is not necessarily the case that when we ask the question, we have to give the answer as well. However, I take the member's point.

I frankly prefer to feel that as a nation we would do the right thing because it is the right thing to do, but if that is not enough, the reality is that this will save the provinces that are engaged in it and the nation enormous amounts of money. The upfront costs associated with intervention are so much less than the lifetime costs of not intervening. It is not really even arguable. To answer the question specifically, that would be the answer.

One of the things we really do have to recognize is that the federal government must be compelled to show leadership on this to pull all the provinces together. In the Maritimes, if New Brunswick stepped up and really did this better than everybody by a long shot, which it should and I wish it would, but if it did, there would be people who would relocate to my province specifically to have access to this service.

That is one of the reasons I am fearful that provinces would be a little reluctant to step up and do the right thing. That is why it is important for the national government to bring all the provinces together, so that all of the provinces can work together and move together to remedy this outstanding grievance. [Translation]

Mrs. Claude DeBellefeuille (Beauharnois—Salaberry, BQ):

Mr. Speaker, I very much appreciated my hon. colleague's speech. I know children who have autism and I know how hard it can be for their parents.My question for the member is this: does he have any support for his motion? Can he tell us if the Autism Society Canada, for instance, has written to him to indicate its support for the motion? [English]

Hon. Andy Scott:

Mr. Speaker, as a matter of fact, I have had these discussions with people from a variety of organizations and have a great deal of support. It is not unanimous and it is important that we recognize that because I do not think we can allow ourselves to fall into the trap, to wait for everybody to agree on everything before we do anything. We cannot. There are too many people.

It has to happen right now and we will deal with those issues that are out there, and there are because I am getting calls from people who are questioning elements of this as well, and that happens. However, the feedback is overwhelming, particularly from parents, people who are affected and who know that time is running out soon.

We are talking about somebody who had a child nine months ago. We cannot imagine the feeling if we knew that there was something available, we knew it would give our child a better life, and we could not afford it. It just does not seem Canadian to me.

Mr. Paul Dewar (Ottawa Centre, NDP):

Mr. Speaker, I want to applaud the member for bringing this forward. My wife is a teacher. She actually teaches junior kindergarten. She has seen the explosion of autism in the school at which she teaches. Identifying children early seems to be cutting edge, but we need more support. Will the hon. member comment on that, the funding for it and where it would come from?

Hon. Andy Scott:

Mr. Speaker, obviously, the earlier this intervention can take place, the better the outcomes and the better the likelihood of those outcomes. In some provinces, there is funding for that. It is a mishmash across the country. Credit goes to those who do it. I think we need to do more in many jurisdictions.

That is why it is appropriate for the national government to be engaged in this. It can help. I do not mean help in a negative sort of way, but just in a leadership way to help bring all the provinces together, to ensure that next time the ministers of health in Canada meet together, that this is on the agenda.

101 Noteworthy Sites on Asperger's & Autism Spectrum Disorders

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Why ABA For Autism?

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

"We have to look also at environmental factors, and from my point of view, the interaction between the genetic factors and the environmental factors ... It looks like some shared environmental factors play a role in autism, and the study really points toward factors that are early in life that affect the development of the child"
Joachim Hallmayer, MD, associate professor of psychiatry at Stanford University in California

Even Out Environmental and Genetic Autism Research Funding

Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones.

We need to even out the funding.

Irva Hertz-Picciotto, UC Davis M.I.N.D. Institute Researcher

My Autism Pledge For Conor

Today I pledge to continue;I Pledge to continue to fight for the availability of effective autism treatments;I Pledge to continue to fight for a real education for autistic children;I Pledge to continue to fight for decent residential care for autistic adults;I Pledge to continue to fight for a cure for autism;I Pledge to continue finding joy in my son but not in the autism disorder that restricts his life;Today, and every day, I Pledge to continue to hope for a better life for Conor and others with autism, through accommodation, care, respect, treatment, and some day, a cure;Today, and every day, I Pledge to continue to fight for the best possible life for Conor, my son with autistic disorder.

Dr. Jon Poling : Blinders Won’t Reduce Autism

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.

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It's NOT About ME

I am the father of two sons one of whom is severely autistic with intellectual disability. I have advocated for autism services for autistic children, students and adults in New Brunswick, Canada and I blog and comment about autism on the world wide web. And I like to walk .. a lot.